Archive for Childhood

Eye Contact: A Family History

March 1, 2009 Rachel Childhood, Empathy, Eye Contact, Sensory Processing Issues

I first noticed that my father had trouble with eye contact when I was about ten years old. It was a Sunday, and my grandparents were visiting us. I was practicing a sonata on the piano, and my parents and grandparents had come over to the doorway to listen. I was well aware of their presence, and I felt proud that I had learned the piece so well.

When I was done, I looked over at my family. My mother and my grandparents were looking right at me, applauding and giving me compliments. My father, however, was looking everywhere except at me. He was shifting his stance, too, as though he were uncomfortable. He looked very much like a little boy who had been dropped into our livingroom and couldn’t figure out where he was or how to get home.

Of course, as a child, I took his responses very personally. I interpreted his lack of eye contact to mean that he didn’t care about my music. His shifting around seemed to mean that he was impatient to get away from me. I became very sad and discouraged. How could I reach him? I didn’t know.

Soon after, I saw that my father wasn’t making eye contact at the dinner table. I was excited about something at school and wanted to tell him all about it, but he didn’t look at me or give me any sort of response. It was almost as though he were defending against me. It’s possible that he had always been this way and that I hadn’t noticed it before, but once I saw it, my heart sank. I couldn’t stand feeling so much happiness and enthusiasm without being able to share it with him.

All of this happened 40 years ago, before anyone had the words to talk about what was going on, and before Asperger’s was a diagnosis. I now realize that, like me, my father was an Aspie. But back then, my relationship with him deteriorated. For many years, in my anger and hurt, I tried to be different from him in every respect. But like my father, I have my own problems with eye contact. I can hold eye contact better than he could, but I never know how long I’m supposed to do it. And while I’m looking into someone’s eyes, it’s nearly impossible for me to articulate my thoughts or to listen to what the person is saying. I have to look away in order to think and to speak.

There is also something about being seen, about being held in someone’s gaze, that is deeply upsetting to me. Perhaps it’s the legacy of trying to appear normal all my life. The anxiety that someone might actually see my strange, awkward, eccentric self has always been profound. So I look away, thinking that somehow, I will become opaque—very much like a child who closes her eyes and thinks that other people can’t see her. Do I really think I’m hiding by looking at the ground? Perhaps. On the other hand, I am always upset when people can’t see me properly—when they think badly of me for no reason, or when they ignore me altogether. I’ve lived most of my life in this strange double bind—wanting desperately to be seen properly and wanting desperately to be invisible.

Unlike my father, I have no trouble holding eye contact with close family members. I can look into my husband’s eyes and into my daughter’s eyes, and listen to them at the same time. But I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. I’m not just afraid of being seen. In fact, as I come out to more and more people about being an Aspie, I feel much less afraid of being seen.

What really terrifies me, more than anything else, is to look into the eyes of another human being and see that person’s soul. When I look into a person’s eyes, I have such a profound empathic experience of the person that it’s overwhelming. It’s not that I read the person’s individual emotions. It’s as though the person’s whole being is coming at me.

I’d never given this kind of experience much thought until I read a book called Love, Loss and Healing: A Woman’s Guide to Transforming Grief by Susan T. De Lone. The author had lost her husband of 27 years to cancer, and she wrote about watching him die. When he passed, she felt his soul all around her in his hospital room. His soul was so vast that it filled the room, but could not be contained by it. She saw in that moment how difficult it is to have a vast soul in a limited, human body.

This vastness of soul comes at me through a person’s eyes. It is never the vastness of a generic, undifferentiated soul but of a unique, complex, multi-layered soul with pain, with fear, with love, with everything that it means to be a human being. To look into a person’s eyes for a few seconds, and then to look elsewhere, is often the best I can do. Averting my eyes is my neurological, spiritual, and psychological shield.

I envy people who don’t need this kind of shield. Sometimes, I’d like to do what others do so easily. But I don’t consider my way of seeing to be a deficit. It’s simply a different kind of sight. In the social world, it doesn’t do me much good, but the universe, like the soul, is vast. I try to keep my eye on the big picture. It helps to keep things in perspective.

© 2009 by Rachel Cohen-Rottenberg

8 comments

Women, Girls, and Asperger’s Syndrome

February 22, 2009 Rachel Childhood, Diagnosis, Friendship, Girls and AS, Women and AS

A few months ago, I participated in a very spirited online discussion with a number of other women about whether female Aspies present differently than male Aspies. The more I learned about women’s experiences, the more I realized that the diagnostic criteria and the resulting research are based mainly on male models of thought and behavior. As a woman, I fit the relevant criteria, but they don’t explain the whole of me.

For example, Simon Baron-Cohen posits the “extreme male brain theory” to explain Asperger’s Syndrome. He employs a dichotomy between the empathizing female brain and the systematizing male brain. In Baron-Cohen’s theory, Aspies have extreme versions of the systematizing male brain. It’s as though the good professor has never considered the idea that systematizing and empathizing could exist in extreme measure in the same brain. His theory leaves out those of us who both systematize and empathize in non-normative ways.

I was becoming very frustrated by these kinds of ideas when I discovered Tony Attwood’s The Complete Guide to Asperger’s Syndrome. His book was the first one by a male researcher that made any sense to me as an Aspie woman.

Attwood begins his discussion of girls and Asperger’s Syndrome by questioning why the ratio of diagnosed male to female Aspies is 4:1. He suggests that the reason for this disparity is not that there are more male than female Aspies, but that many female Aspies do not appear to meet the clinical criteria. In a clinician’s office, female Aspies can often hold a reciprocal conversation, make eye contact, and use facial expressions appropriate to the subject matter. In other words, female Aspies can appear to have no social impairments.

As always, the problem is that many professionals do not look more deeply into whether we learn such skills intuitively. Attwood very aptly notes that we do not. Rather, we employ a number of intellectual strategies to learn social skills or to mask the lack of them.

Some male Aspies use the very same strategies. In fact, it would be difficult to find an adult Aspie, male or female, who has not employed at least some of these strategies. For the present, however, I will concentrate on Attwood’s insights about the social skills of female Aspies and why we often do not seem to meet the diagnostic criteria.

1. Careful observation of social situations
Girls with Asperger’s Syndrome often appear to be passive bystanders in group interactions. However, we are anything but passive. We spend our time actively observing others in a social group and determining what to do. As Attwood writes: “An example of a camouflaging strategy is to conceal confusion when playing with peers by politely declining invitations to join in until sure of what to do, so as not to make a conspicuous social error. The strategy is to wait, observe carefully, and only participate when sure what to do by imitating what the children have done previously (Attwood 46).”

I have always been the person on the outside of the social bubble, watching. As a child, I would look in, figure out the rules of the game, and decide whether I could successfully fit in. I would only enter a group if I felt reasonably sure of the rules of engagement. If the rules changed, I became quite disoriented and would leave the group very quickly (if I weren’t simply paralyzed by confusion, in which case I might remain until the group broke up).

One positive outcome of a lifetime of observation is that I became a very good facilitator in my last job. From all my years of watching people interact, I’d become well versed in observing process, so I could facilitate our weekly meetings with ease. I would notice who was quiet and hadn’t spoken up yet, who was talking too much, and who was trying to speak but couldn’t get a word in edgewise. I could step in and make room for each person to speak, and when the conversation was losing its focus, I could lead people back very easily. It was one of the best roles that anyone has ever given me.

2. Taking on the persona of a socially skilled peer
Many Aspie girls become very accomplished mimics. As Attwood writes: “The child adopts a social role and script, basing her persona on the characteristics of someone who would be reasonably socially skilled in the situation, and using intellectual abilities rather than intuition to determine what to say or do (Attwood 46).”

As I’ve written before, I chose a different girl each year of high school and tried to be like her. In creating a false persona, I was able to mask much of my confusion and insecurity. I spent a great deal of time observing the girl I wanted to become, thinking everything out, and getting my script in place. It was quite painful to shoehorn myself into another girl’s personality, but it allowed me to interact with other people, which felt much safer than enduring the ridicule that came with being alone.

3. Being quiet and following instructions
Despite the fact that I can do a monologue as well as the next Aspie, my main coping strategy as a child in school was to be quiet. Attwood writes that many of us use “strategies to avoid active participation in class proceedings, such as being well-behaved and polite, thus being left alone by teachers and peers (Attwood, 47).”

I went to a very conservative school that rewarded politeness. So long as I was well behaved and answered the questions the teacher asked, I didn’t get myself into any kind of trouble.

4. Developing protective friendships
Girls with Asperger’s tend to be more loyal in friendships than typical girls, and often develop friendships with someone who is safe and maternal. Attwood writes:

“A girl with Asperger’s syndrome…is more likely than boys to develop a close friendship with someone who demonstrates a maternal attachment to this socially naive but ‘safe’ girl. These characteristics reduce the likelihood of being identified as having one of the main diagnostic criteria for Asperger’s syndrome, namely a failure to develop peer relationships. With girls, it is not a failure but a qualitative difference in this ability. The girl’s problems with social understanding may only become conspicuous when her friend and mentor moves to another school (Attwood 47).”

In my senior year of high school, I became best friends with a girl who was quite maternal and protective of me. She was very talkative and funny, and I allowed myself to get swept up by her energy. She was also an outsider and was thrilled to make friends with me. We were nearly inseparable. But when we went off to different colleges, I was a complete basket case. I showed up at college with absolutely no idea about how to interact with a new group of people. My freshman year roommate was anything but maternal and protective, and I made a number of social faux pas on which she was only too happy to capitalize.

It wasn’t a good year, especially after I flooded the entire first floor of my dorm by attempting to flush tampons down the toilet. An act of passive aggression, you say? Very likely.

5. Becoming little philosphers
While Aspie boys tend to become little professors, capable of holding forth with an astonishing array of facts, Aspie girls tend to become little philosophers who think long and deeply about human interaction. As Attwood writes: “From an early age, girls with Asperger’s syndrome have applied their cognitive skills to analyse social interactions and are more likely than boys…to discuss the inconsistencies in social conventions and their thoughts on social events (Attwood, 47).”

Analyzing social situations and human motivation is still one of my favorite pastimes. I can’t say that I always understand what makes people tick, but I’m very interested in the question nonetheless. The fact that female Aspies tend to observe, analyse, and critique social interactions may appear to indicate that we have no social impairments and feel more comfortable with people than with objects. It seems to me, however, that the only people interested in observing, analysing, and critiquing social interactions for free would be people who can’t intuitively grasp them.

6. Watching soap operas
My friends, I’m about to let you in on my deepest, darkest secret. When I was a girl, I watched soap operas with my mother every winter afternoon. We watched daytime dramas called The Edge of Night, The Secret Storm, and Another World.

There. Now I’ve said it. I feel so much better.

Actually, this special interest is not unusual for Aspie girls. Attwood writes: “The unfolding drama provides a voyeuristic insight into interpersonal relationships…The activity also provides a ‘safe’ vantage point from which to observe and absorb knowledge on friendships and more intimate relationships (Attwood 181-182).”

Because of the melodramatic aspect of soap operas, I can’t say that I learned a lot about how to form intimate relationships. What I did learn, however, was very useful to me: People make messes of their lives because they won’t say anything directly. In every single episode of every single soap opera, people suffered unnecessarily because someone, somewhere, was hiding something. It was absolutely excruciating.

I used to ask my mother why people didn’t just come out and say who they loved or whose baby they were having. Her response was always the same: ”Well, if they did THAT, there wouldn’t be a STORY!”

If anything, watching soap operas confirmed in me the value of Aspie directness.

For those who are Aspie women, or who are raising Aspie girls, I hope this information will be a useful starting point for understanding more about how we navigate our world.

© 2009 by Rachel Cohen-Rottenberg

20 comments

Stimming

February 16, 2009 Rachel Childhood, Sensory Processing Issues, Stimming, Vestibular System

Autism Wiki defines stimming as “a repetitive body movement that self-stimulates one or more senses in a regulated manner.” Stimming can involve one or more of the five senses, the vestibular system (which controls balance, movement, and spatial orientation), and the proprioceptive system (which provides information about the relative positions of the parts of the body).

Stimming is generally an unconscious nervous system response. In psychiatric terms, it is a kind of stereotypy, a continuous movement without apparent purpose (although it certainly serves many not-so-apparent purposes). It is one of the symptoms of autism listed in the DSM-IV, although many autistic people do not stim.

Common Forms of Stimming
There are many different types of stimming. The following list provides some examples:

  • Visual: Blinking, looking at fingers, staring at a light, lining up or spinning objects
  • Auditory: Snapping fingers, humming, grunting, echolalia (repeating words spoken by another person), repeating rote phrases
  • Tactile: Scratching, touching objects, biting nails, twisting hair
  • Taste: Licking objects or placing them in mouth
  • Smell: Smelling one’s own body, objects, or other people
  • Vestibular: Rocking (back and forth or from side to side), spinning, pacing, jumping
  • Proprioceptive: Wrapping arms inside shirts, hand flapping, toe walking, tapping fingers

Some also count perseveration (our Aspie fixation on one or more special interests) as a form of stimming.

My Childhood Stims
For me, stimming is a mode of self-soothing. It helps to calm my senses and acts as a barrier to stimulation from the outside world.

When I first started learning about Asperger’s and saw references to stimming, I couldn’t believe my eyes. So many of the behaviors were ones that I had manifested as a child and some had even come along with me into adulthood. My childhood home was constantly overstimulating: loud voices, poor boundaries, erratic behavior, and a TV that came on at 6 am and went off at 11 pm. So I needed a lot of soothing.

Here are some of my childhood stims:

  • I would lie in bed and squint at the light coming from the ceiling fixture in the center of my room. I enjoyed seeing all the little rays of light that seemed to shoot out in all directions.

  • I loved lining up objects, such as different types of candy, dolls, coins, and baseball cards.

  • I liked spinning the wheels on my Tonka trucks far more than I enjoyed playing with the trucks themselves. I still like looking at bright spinning things.

  • I constantly twisted my hair by winding it around my fingers. It used to drive my parents up the wall. One of the recurrent imperatives from my childhood was “Stop playing with your hair!” But I never gave it up. I mainly loved the softness of my hair and how the ends felt against the tips of my fingers.

  • Remember those big fat green number 2 pencils from grammar school? The kind where you could see the lead on the bottom because there was no eraser? Every day in class, I used to chew on the ends of those pencils and lick the lead on the bottom. Between the lead-based paint and the pencil lead, it’s amazing that I have any brain cells left.

  • I always enjoyed wrapping my arms and hands inside my shirt or sweater. It made me feel very secure. I do a more adult version of this stim now by putting my hands in my pockets when I’m out walking. When I wear a skirt or jacket without pockets, my poor arms and hands feel forlorn and just don’t know what to do with themselves. It makes me very nervous.

  • I loved to tap my fingers and do complex patterns, alternating fingers and counting in different sequences. This stim is another that pops up in my adult life from time to time.

My Adult Stims
Here are my adult stims, most of which I do only at home:

  • Toe walking and hand flapping. I have no memory of doing either of these stims as a child, although I can vividly recall the day my principal told me to start walking by putting my heel down first. Clearly, I was walking toe first, but I soon stopped. (I was a very compliant child.)

  • Twisting my hair (even though it’s pretty short now).

  • Counting the buttons on the TV remote control by tapping them lightly with my fingers in different patterns, pressing my fingers against the sides of each one, and figuring out how many even sets there are. (This stim drives my husband nuts when we’re watching a movie. He generally takes away the remote control and holds my hand instead.)

  • Eating foods with soothing textures, like almond butter, peanut butter, and tahini. I’ve been noticing lately that it’s not the flavor I’m after with these foods, but the texture. It’s the tactile experience that makes the stim work.

  • Riding my bicycle on a stationary stand. I like the repetitive circular motion.

  • Looking at a “magic wand” with lights that spin when I push a button.

  • Organizing objects of any kind, any time, anywhere.

The last time I saw my OT, she mentioned that engaging the proprioceptive system includes putting different sorts of pressure on the joints. The right amount of pressure is very soothing. For this reason, weighted blankets, weighted vests, and other objects are often very calming to autistic people. I asked her whether toe-walking is soothing because of the pressure it puts on the joints, and she said, yes, that toe-walking puts more pressure on the joints per square inch than walking heel first. Hand flapping is also calming for much the same reason.

On the advice of my OT, I’ve been wearing a weight on each of my ankles, and I’m finding it very calming and grounding. I’ve also ordered a weighted blanket and a weighted vest. I’ll post more about using them once they’ve come in the mail and I’ve had a chance to try them out.

© 2009 by Rachel Cohen-Rottenberg

16 comments

Aspies and Friendship, Part One

February 2, 2009 Rachel Childhood, Friendship, Girls and AS

Many Aspies have difficulties navigating the world of friendship, and I am no exception. I have good friends of many years duration, but I find it hard to traverse the territory between acquaintance and close friend.

As I wrote in my last post, high school was the beginning of my social difficulties. I couldn’t understand the rules of social interaction. I always felt mystified by that strange, invisible force field that seemed to separate me from other people. I pretended to be “normal,” but I had a sinking feeling that I wasn’t fooling anyone. I was very uncomfortable in my own skin, felt constantly overloaded, and couldn’t imagine why anyone would put up with me.

Nonetheless, I had several friends in high school, all of whom were outsiders of one kind or another. My friends seemed to like me, but to be honest, I still don’t know why. Because I was involved in music, I had a kind of crowd, but I always felt socially outclassed and very much younger than everyone else. It was as though everyone were growing up around me, and I was a perpetual kid.

Not surprisingly, I got verbally bullied fairly regularly.

When I was a freshman, one boy wrote in my autograph book: “To a girl who nobody likes and a teacher’s best friend.” I was so naive that I kept looking at what he wrote, trying to figure out the joke. I couldn’t imagine that anyone would be so mean as to write such a thing in an autograph book and be serious about it.

I took to sitting alone, just to have a break from other people. It felt like a great relief—that is, until another student came up to me and said, “Hello, friendless.” That was enough for me. I decided to sit with other people on a regular basis no matter how exhausting it was.

By my senior year, I began to realize that people thought I was rather strange. Several people signed my yearbook with a variation of “It’s been real (?)” and a couple of people made crude sexual jokes. I couldn’t figure any of it out. Did people think I wasn’t real? Was there a question in their minds? And were they actually having sex in high school while I was studying for my SATs?

I was so behind the curve.

Was I strange?  I don’t think I was, really. I was different, that’s for sure. I was also exhausted from the physical and mental exertion of trying to keep up with lots of conversations, of walking in the midst of a crowded high school, and of defending against the noise and the chaos in the hallways. I was nearly overwhelmed with anxiety over my need to mimic other people, and I felt panicked by my inability to understand why I hadn’t felt like a person since grammar school.

I couldn’t even figure out why people laughed until a friend explained it to me. She said, “It’s easy. If you think it’s funny, laugh. If you don’t, don’t.”

I was really struggling.

College and graduate school weren’t all that much of an improvement. I felt equally lost in an even bigger world. I excelled academically, and that gave me a certain amount of self-esteem, but it was wearing very, very thin.

I turned a corner of sorts when I began a career as a technical writer. I lost some of my insecurity and became much more sociable. I began to regain that sense of self that had been missing since childhood. I have been puzzling over those days and why I did so well. I’ve finally discovered the answer.

The software industry was the first daily environment since grammar school that made sense to me. The rules were clear. The projects were well defined. I did a good job and got rewarded for it. Best of all, writing departments were populated by people with literature and language degrees, like myself. I made several friends with whom I am still in contact almost 20 years later.

I didn’t spend a lot of time with friends outside of work, though. The structure of the workplace was very important. Put me in an unstructured situation, without a clear goal, and I was dazed and confused. Working in an office, in a structured situation, I got to have lots of interesting conversations and still get my work done. Each day during my lunch hour, I’d take a walk with a friend and we’d talk about religion, or politics, or what was going on in our lives. It was close to perfect.

When my daughter was born, I discovered another avenue into the world of adult friendships. Showing up anywhere with an infant was an instant conversation starter. People would ask her name, and tell me how sweet she was, and show me pictures of their own children. When we moved into a neighborhood with a lot of kids, I had a ready-made social group of other parents.

But as my daughter grew, I began to notice something troubling about my neighborhood friendships. With a couple of notable exceptions, my relationships tended to consist of people telling me about the problems in their lives but rarely asking about my own. In fact, it didn’t seem to occur to them that I might have problems, too.

I didn’t understand the reason for this lack of social reciprocity. At the time, I thought that I wasn’t responding to people properly and giving them the support they needed. I was convinced that I was saying the wrong things, and so they didn’t want to know anything about my experience.

I now realize that people were responding to my Aspie innocence. People knew that I was trustworthy, and they would tell me things that they didn’t talk about with anyone else. I heard about alcoholic husbands, abusive partners, and the details of serious health problems. When I went for walks in the neighborhood, elderly ladies would even run out in the snow in their slippers to talk to me.

It was all very flattering, and even reassuring, to some degree. But it was also very empty. When my first marriage broke up and I told some of the neighbors, they literally took several steps back and didn’t want to hear about it. I realize that I shouldn’t have been shocked by this turn of events, but I was.

I’ve learned a lot about myself since then. In another post, I’ll write about more recent experiences and how I currently navigate the world of other people.

© 2009 by Rachel Cohen-Rottenberg

14 comments

Questions on Growing Up Aspie

February 1, 2009 Rachel Childhood, Friendship, Girls and AS

Last week, Erin asked some great questions about raising an Aspie daughter. My situation is a bit different, in that I’m an Aspie mother raising a neuro-typical daughter, but my experience might be of some help.

Erin began by saying:

“I’m trying hard to understand how my daughter thinks. I don’t ever want her to get the idea that she’s broken, or needs to be fixed, or needs to conform or submit to someone’s ideal of normal, etc. I want her to believe in herself while learning to navigate the NT world, if that makes sense. But the social stuff is hard for her (already, she’s 5 and it’s only going to get worse).”

Here are Erin’s questions, along with my answers:

1. How did you navigate friendships when you were young?

When I was in grammar school, I didn’t have too many problems with friendships. One reason was that I tended to favor boys over girls. I felt that I had more in common with boys. They were more likely to be athletes like me, and they were more straightforward than girls. Plus, they didn’t spend recess talking about their hair or their clothes, two subjects that did not interest me in the least. In fact, they didn’t spend time at recess talking at all, so I was relieved of the obligation of standing around and trying to figure out how a conversation works. Instead, we played whatever sport someone had in mind at the moment. It didn’t matter what we played, so long as we were running around and screaming our heads off.

I also made an effort to befriend girls who were outsiders. My parents told me that I should seek out the girls who were excluded. My mother and father were not religious people, but they had pride in being Jewish and felt that this was the Jewish way. They said that because we Jews have faced isolation and exclusion, it’s incumbent upon us to reach out to people in similar situations. So I did, and gained both good friends and a sense of moral power.

Another aspect of grammar school that made life easier was that I went to a small, conservative, well-run public school. There were lots of rules there, and the rules were enforced very fairly and consistently. The principal did not allow any kind of physical fighting to go on in his school. If two boys were caught fighting on the playground, he would call an all-school assembly (grades K-8) and read us the riot act. Everyone feared him, but he made school a very, very safe place. I did not feel uncomfortable there, because the prime directive was that kids be safe with one another, and that helped me to feel good about myself.

But then, there was high school. High school changed everything. I had a very, very difficult time. I went from a small grammar school to a very large, chaotic high school. The social relationships became more complex, and I couldn’t navigate them very well at all.  I gave up sports (young ladies did not play baseball in those days), and I felt like a ghost most of the time. I spent a lot of time faking it, pretending that I knew what was going on when I had no clue. Each year, I would choose a girl I wanted to emulate and spend the whole year trying to act like her and be like her.

Apparently, this is quite common for Aspie girls. It took me many years of work in adulthood to assert my personality and to take up my share of the space on this planet.

2. How about family relationships?

My family was quite dysfunctional and very overwhelming to the senses. I gravitated to the calmest people in the family–my maternal grandparents and one of my uncles. They were always very kind and very loving. I can feel myself relaxing just thinking about them.

3. With all the ways you were different from other people, how did you find empowerment and confidence?

Being an athlete helped tremendously when I was a kid. I felt very powerful being able to pitch, to hit a baseball out of the infield, and to run and slide and do all the things that girls weren’t supposed to be able to do.

When I was in high school, I traded in athletics for music. I participated in every musical activity the school had to offer—marching band, orchestra, jazz band, concert choir, and the vocal ensemble. I was the piano accompanist for the ensemble and for a Gilbert and Sullivan musical. I learned how to play the alto sax so that I could be in the jazz band, and I loved to sing and to play the guitar.

It’s a tragedy that so many schools have cut their music and arts programs. Without an excellent music program in high school, I might easily have used drugs to deal with my feelings of isolation. I was very, very fortunate to live in the time and place I did.

But the most important thing I’ve ever done for a sense of personal empowerment was to train in a martial art. When my daughter was seven, I got her involved in a dojo for women and girls, and I joined the dojo when she was about 11. My daughter left at 14 with her purple belt, and I left with my blue belt. (I’d still love to train, but the dojo is too far from where we live now.) Using the empowerment, focus, and agility she learned in karate, my daughter is now a goalie for her school’s soccer team. (And this was a child who actively ran away from the ball her first year.)

I love the dojo because its philosophy is to teach girls and women how to trust their bodies, use their voices, walk with confidence, and defend themselves. There were a number of developmentally disabled girls and women there, and they did just fine. There is no girl or woman who cannot learn a martial art. I have seen it with my own eyes. I have watched girls grow in confidence in beautiful and powerful ways.

At the dojo, they do a lot of work on verbal self-defense, since that is what girls most need on a daily basis. They do a lot of role playing in which a girl is told she is too fat, or too thin, or stupid, or weird, and then everyone has to come up with a way to shield and to respond. It’s a very supportive environment and very affirming of differences.

4. Is that too many questions?

No, not at all. Any and all questions are welcome.

© 2009 by Rachel Cohen-Rottenberg

9 comments

Inability to Visualize: More on Why I Love Picture Books

January 25, 2009 Rachel Childhood, Making Lists, Picture Books, Visual/Spatial Skills, Word Pictures

Last week, I found a used children’s book called How It Works: Funny Bones and Other Body Parts, written by Anita Ganeri, and illustrated by Steve Fricker and John Holder. The book is written for third or fourth graders. I was attracted to it because there are basic systems in the human body that I have never been able to understand. I wasn’t interested in complex, high-level information. I was interested in things like the difference between a muscle and a tendon. So I bought the book.

It’s wonderful. Each section consists of detailed drawings that cover two pages. The book presents each body system by using analogies to familiar objects. For example, in the section that illustrates how different parts of the brain function, a compass symbolizes the ability to orient oneself in space, and a megaphone denotes the ability to understand speech.

I began reading the book the night I bought it, and I sailed through the sections on hair and skin, bone and muscles, the five senses, the brain, and the respiratory system. I was enjoying myself immensely until I got a few minutes into the part on the circulatory system. Very soon, I began to feel very, very dense.

I will try to describe why. On the picture of a heart are the following easy-to-read chunks of text:

Arteries are the blood vessels that take oxygen from the heart to the rest of the body.

Veins are the blood vessels that bring carbon dioxide to the heart from the rest of the body.

So far, so good. Arteries take blood away from the heart, and veins bring blood to the heart. Very nice. I can grasp that. But then, there is another chunk of text, and this is what it says:

Arteries take carbon dioxide from the heart to the lungs. Veins bring oxygen to the heart from the lungs.

At this point, my poor brain began to twist itself into knots and lots of grey matter started dissolving. In a nutshell, here is the problem:

1) On the picture, the text says that arteries take oxygen away from the heart. But then, the other text says that arteries take carbon dioxide away from the heart. To the lungs. (How did the lungs get there, anyway?)

2) On the picture, the text says that veins bring carbon dioxide to the heart. But then, the other text says that veins bring oxygen to the heart. From the lungs. Help!

Don’t forget, I am looking at a very well-rendered picture in a children’s book, and I just couldn’t get it. I couldn’t see the relationship between the words and the pictures at all. I finally put the book down and felt really, really stupid for the rest of the night.

A day or two later, I picked up the book again, determined to understand. So I looked at the pictures. And I looked at the words. And then it dawned on me to draw the pictures out myself.

So I did. I drew the heart with its two chambers, and then the lungs to either side. I drew the aorta, and I labeled what it was for. I drew the superior vena cava and inferior vena cava, and I labeled what they were for. I drew veins from each lung to the heart, and arteries from the heart to each lung. Finally, I drew arrows to chart the blood flow from the body to the heart, from the heart to the lungs, from the lungs back to the heart, and from the heart to the rest of the body. I cannot draw to save my life, but at least I drew a picture that made sense to me.

Finally, and I know you will be shocked to hear this, I made a list. There is always a list somewhere, waiting to be born, and I will always find it. My list (which is now tucked safely inside the book for easy reference) looks like this:

1) Veins carry carbon dioxide from the body to the right chamber of the heart.

2) Arteries carry carbon dioxide from the right chamber of the heart to the lungs, where the blood picks up oxygen.

3) Veins carry the oxgen from the lungs to the left chamber of the heart.

4) Arteries carry the oxygen from the heart to the rest of the body.

I can understand this system as a linear sequence of events. I can conceptualize the difference between what arteries do and what veins do. But I cannot visualize it in my mind at all. I have the words, and I have the pictures in the book. The pictures help me grasp the meanings of the words. But I cannot hold the pictures in my mind.

Now, if I were in an operating room with a surgeon who was doing open heart surgery, and he or she explained all the different parts while showing me each one, and I could see the blood flowing and the valves of the heart opening and closing, I would hold that picture in my head for the rest of my life. I’m certain of it. I can visually remember things I see and touch. But I cannot visualize things I read, and I cannot hold a picture I see in a book in my head for very long.

So how did I get all those As in grammar school?

We had picture books to read, but tests and homework consisted solely of words. All I had to do was rote memorization, something that many Aspies are very good at. In those days, I had a nearly photographic memory. I could look at a word once and know how to spell it. All my life, I have seen spoken words and my own thoughts as word pictures in my mind. I literally see all the words spelled out across my mental screen.

So I could regurgitate information on a test without understanding it at all. I had lots of facts and lots of details, but no big picture—another Aspie trait. I could not have told you how the body parts fit together. I saw them as discrete objects. Had I gone to a school in which we were expected to synthesize information, I would have had a much more difficult time of it.

In any case, in these days of educational software with lots of blinking lights and moving images that endlessly distract and ultimately overload my senses, I’m glad to know that picture books have not gone the way of the wind. Where would I be without them?

© 2009 by Rachel Cohen-Rottenberg

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Rachel’s Aspie Photo Album

January 25, 2009 Rachel Childhood, Girls and AS

Since being diagnosed, I’ve been looking at childhood photos of myself in a new light. Not only do I see a kid on sensory overload trying very hard to be normal, but I also see some interesting Aspie things I do with my eyes and with my arms. So here are some photos of me from infancy to my senior year in high school (1958 to 1976).

 
Studio portrait taken sometime between June and December, 1958
I’ve already got that focused Aspie stare and a look of alarm mixed with fascination. It’s as though I’m thinking,  “Wow, I had no idea there would be THAT many visuals. This is kind of scary and very cool at the same time.”


  

  

 
 
 
 
 

 








Outdoor photo, circa 1960
I seem to be looking off to the side in this photo, but it could just be that the sun was in my eyes.

Okay, I put it here because it’s cute. ;-)  

 
 
 
 

 
 
 
 






Fifth-grade school photo, 1969
It’s subtle, but my eyes are definitely averted in this photo. I couldn’t quite make eye contact with the photographer and his camera.

  

  

  

  

  

  








Newpaper photo, summer, 1969
My father took this photograph after I won a statewide piano contest.

Playing in recitals and contests completely overloaded my senses, and I felt very empty inside.  I recall vividly going through the motions of having the picture taken and trying to pretend that everything was fine.

 
 
 
 

  

  

  

 

 










Photo in the music room at my high school, spring, 1976
I love this photo, because it shows me concentrating at the piano. By this point, I had switched piano teachers and was freed from the trials and tribulations of recitals and contests. My new teacher was an elderly French lady who taught me proper technique and helped me break down a piece of music in order to understand all the different parts.

Recently, my oldest friend in the world sent me an email to tell me that she had had a very vivid sense memory of sitting in the sun in the music room, listening to me play the piano. Since I received her email, this photo has become especially precious to me.

  

  

  

  

  
 
 
 
 
 
 










Photo taken outside my high school, just before graduation, 1976
I remember feeling very relieved because high school would soon, mercifully, be over. It was a beautiful, breezy spring day. As I look at it now, I can see that I didn’t quite know what to do with my arms (another Aspie trait).


























My hippie-chick photo, 1976
I saved this one for last because it is one of my favorite photos of myself. I am looking directly into the camera, and on my face is the fierceness and the focus that I felt inside.

Note that I’m wearing my regulation hippie-chick attire: beaded necklace, embroidered peasant blouse, and blue jeans. I’ve also got the long hippie-chick hair, parted in the middle.

 

I love looking at old photos with new eyes.

© 2009 by Rachel Cohen-Rottenberg
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Picture Books, Anyone?

January 14, 2009 Rachel Childhood, Picture Books

When my daughter was young and we were homeschooling, I bought lots and lots of children’s books. I especially enjoyed buying used picture books. As my daughter got older and left the era of picture books behind her, I couldn’t bring myself to part with them. I loved having them, but I kept wondering why. Was it nostalgia? Was I unable to let go of my daughter’s childhood? I wasn’t sure.

In the past few months, I’ve found myself buying children’s books from the thrift store where I volunteer. In the beginning, I chose books that we had owned and given away. When I brought them home, I put my daughter’s name in each of them, even though she had no interest in them at all.

Then I started reading Women From Another Planet? edited by Jean Kearns Miller. In it, there is an interesting discussion of the difference between Aspie and NT developmental trajectories. The book suggests that for some Aspies, the developmental sequence does not go from babyhood to childhood to adolescence to adulthood, as it does for most NTs. Rather, some of us Aspies maintain certain aspects of our childlike minds even as we develop more mature mental abilities:

“It seems that as an NT grows up, something called brain cell pruning take place—some areas of the brain atrophy in order to produce the normal NT adult. I don’t think that’s happened with me, which is why some people think of me as childish because I still have pleasure in many of the things I had as a child. Perhaps people sometimes mistakenly think that because the childlike parts of my mind have not atrophied, that the adult parts of my mind have not developed, which is incorrect.” (Kearns, 22)

Reading this section broke open my love for children’s books. I thought, “Hey, wait a minute! I love those books. I’m putting MY name in them.” And I have. I’ve even been reading one or two of these books every day. And whenever I see a beautiful children’s picture book, whether it’s about a Jewish holiday or the weather or a folk tale from Africa, I pick it up.

In the process, I’ve also rediscovered my love of reading biographies. When I was a child, I read nearly every biography on the shelves of our grammar school library. Recently, I found an autobiography by Willie O’Ree, the first black player in the National Hockey League. It’s directed at middle-schoolers, and I loved it, especially because he mentions hockey players that I admired when I was a child. I hadn’t thought about those names in many years. The book brought back a host of very good memories.

As I think back, I find I have few memories of reading picture books as a child. I was a self-taught reader by the time I started school, and by the sixth grade I was reading Of Human Bondage and The Grapes of Wrath. So perhaps my developmental trajectory was to start with the serious works of literature, earn two English degrees, and end up with the children’s books. I rarely indulge my Aspie penchant for collecting things (I hate clutter) but with the children’s books, I’ll gladly make an exception.

© 2009 by Rachel Cohen-Rottenberg

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The Blessings of Being a Tomboy

December 31, 2008 Rachel Childhood, Girls and AS
Tomboy. Remember that word?
These days, it has all but disappeared from the English language. My husband tells me that in the 1980s, people sometimes called his daughter a tomboy because she excelled at athletics. He and his late wife always corrected them with a variation of the following statement: “Our daughter is not a tomboy. She is a strong girl.”
While this nomenclature might have worked for my stepdaughter’s generation, it would not have worked for me. Growing up athletic in the mid-1960s, before Title IX and the women’s movement, I was a tomboy and I relished the word. Neither just a boy nor just a girl, I could be different. My sense of “otherness” had some kind of name. It was a name that gave me what I needed most: a way into the world of other children.
The road to my becoming a tomboy began when my grandparents went to the 1965 World’s Fair and came home with the most unlikely of gifts: a baseball glove. I was seven years old. When my grandfather took the gift out of the package, my jaw dropped. Why had they brought me a baseball glove? I had never expressed any interest in the game. Were my parents behind it?
As I stood gazing at this odd new possession, my grandfather explained how to use it. He told me to catch the ball in the webbing between the thumb and the forefinger, and to throw the ball with my other hand. Because I was a leftie, he put the glove on my right hand. Then, he lightly tossed me my very first baseball.
I was immediately hooked. If I could have stood out in the backyard tossing the ball back and forth with him forever, I would have done it. As it was, I decided to learn all I could about baseball. I started to follow the Red Sox. I avidly studied the mannerisms of all the players and soon became an accomplished mimic. Determined not to “play like a girl,” I learned how to slide, how to catch, and how to throw. By the time I was eleven, I could throw a fastball, a curveball, a slider, and a forkball.
Of course, officially, I was not a tomboy. Officially, I was still a girl and therefore not allowed to play Little League. So my games were all neighborhood pick-up games. Every day, I’d run home from school, change out of my dress, and set out to find a group of kids. One afternoon, as I ran out the back door, I realized that someday, I would have to do something other than assemble another ad-hoc team. Someday, in the unseen and distant future, I would be a grownup.
But not now. Not yet. I had a game to play.
When I did think about becoming a grownup, my fantasies centered almost exclusively around baseball. I wasn’t just planning to become the first woman to play for the Red Sox. There was more—much more. I would lead the team to victory in the World Series by pitching a perfect game.
Every night, before I went to sleep, I rehearsed the entire scenario. Dressed like a boy, my long hair hidden under my Red Sox cap, I’d take the mound for Game 7. Inning after inning, no one on the opposing team would hit a ball out of the infield. Nor would I give up a single walk.
As the innings ticked by, the suspense would increase. By the top of the 9th inning, a hush would come over the crowd. When I finally struck out the last batter, I’d take off my cap, throw it into the air, let my hair come down, and show the world that I was really a girl. Pandemonium would ensue. The other players would carry me off the field on their shoulders to the roar of an amazed and grateful public.
My interior life was quite rich.
While things did not turn out quite as I’d planned, baseball gave me many gifts that might otherwise have eluded me.
The sensory experience itself was a joy. I loved the smell of a new leather glove, the sound of the bat meeting the ball, and the feeling of the dirt as I slid into home. When I played baseball, my senses gave me great delight and a sense of accomplishment.
Playing baseball also relieved me of the pressure of socializing with words. Instead of hanging around on the playground conversing, I could run and move and shout. Freed from the onus of having to stand still in a group and search for the social nuances that eluded me, I could be aggressive, loud, and tough. In a baseball game, I was never awkward. I knew just what to say and what to do. When I yelled, “He can’t hit! Strike him out!” no one looked at me strangely. I was part of something.
Of course, my tomboy days did not last as long as I’d hoped. Decades have come and gone since then, and with them, many struggles. Yet when I look back on my girlhood, I can feel the sense of pride, strength, and possibility that were mine when I wore my baseball glove and took to the field.
In those moments, being “other” was not a bad thing. Being “other,” in fact, was wonderful.
And despite its challenges, it still is. I wouldn’t trade it in for anything.

© 2008 by Rachel Cohen-Rottenberg

3 comments

Early Childhood Memories

December 24, 2008 Rachel Childhood, Girls and AS

When I first realized that I was an Aspie, I began to look at my past with new eyes. As so many of us have found, numerous aspects of our lives make sense for the first time when viewed through the lens of Asperger’s Syndrome.

One of my first memories is that of watching another child, with some kind of helmet on his head, riding a tricycle. I was between three and four years old, and I thought he looked like an astronaut who had been to outer space. I don’t recall talking to him or asking to ride the bicycle. I don’t recall feeling that I could traverse the vast and invisible chasm that separated us. I was fascinated by the helmet, though, and that he kept riding around in circles. I enjoyed observing him very much. It felt safe to be in my little bubble, way on the outside, looking in.

I remember the linoleum on my bedroom floor, riding my tricycle around the room, wearing a pair of blue corduroy pants, and my grandfather picking me up, but I can’t remember any faces. The ones I see in photographs from that time don’t look familiar to me at all. I can remember the gray and yellow floor tiles in the kitchen in vivid detail, but I can’t remember any conversations with a single soul. If I had them, they made no impression on me.

I also recall being five years old and going to kindergarten. I can remember the crayons, and the play dough, and the color wheel, but I don’t recall playing with any of the children. In fact, in my mind, I don’t see other children there at all, except as passing shadows. It was as though I were there alone, caught up in my fascinating new discovery of primary colors and how to combine them.

At some point between five and seven years of age, I began to wonder about the images in other people’s minds. One afternoon, my mother was in my room, talking to me, and I found myself occupied with the fascinating question of how she saw things in her mind’s eye. I realized that in her mind, she had memories of her old neighborhood, of her school, and of her parents, teachers, and friends. I knew that everything she had ever seen and experienced, and everyone she had ever known, uniquely shaped the way she thought, felt, and experienced the world. Because I had not lived her life, I knew that I could not imagine what was in her mind. Seeing her mind in acutely visual, literal terms, I realized that I could not see it at all.

As I grew older, of course, I understood that there are levels of consciousness and feeling that human beings have in common. But for me, that understanding was not a given. It derived from a great deal of thought and an even greater leap of faith.

By the time I was six or seven years old, I realized that I was very different from other people. I didn’t have the words for it at that time, but I knew about my “otherness” and wondered about it, as so many of us did, and as so many of us still do.

© 2008 by Rachel Cohen-Rottenberg

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